1 Carer perspectives of trust and authority during COVID-19

The COVID-19 global pandemic has had a significant impact in the way services are accessed and perceived by patients and their carers Trust in services has shifted, and relationships with healthcare professionals have been affected, with carers now seeking alternative and more accessible sources of support The aim of this paper is to explore the challenges and concerns including issues around trust that carers of people living with dementia and terminal illness have brought to support helplines, the decisions they are having to make, and the impact that the pandemic has had on end of life care Eight helpline support workers were recruited from the Dementia UK and Marie Curie organisations, and semi-structured qualitative interviews were conducted through video calls on Microsoft Teams Interviews were recorded with participants’ consent and transcribed and checked via the Microsoft Stream automated system The data was analysed by means of thematic analysis on NVIVO 11 Interview data was coded according to the point of time in the pandemic;early, later, or general It was found that issues of trust, perceived loss of agency and confusion regarding government guidelines were expressed from the beginning of the pandemic to the current day These stemmed from situations including care within hospitals and care homes, particularly due to a lack of communication from the aforementioned about the welfare of their relatives, and choices being removed from carers about their relatives’ discharge pathways There were also concerns raised about the rapidly and constantly changing guidelines for vulnerable people during the pandemic, with carers seeking information and reassurance from charity helplines rather than authority figures and the government